MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Tuesday, 31 December 2013

Well, it’s been quite a year, in my
book.Internationally, it’s been a
bit of a mess, with seemingly endless blood-letting and just some hopeful
glimmers such as the breakthrough in the Iranian nuclear talks.Nationally, it’s hard to know what to
think, with, apparently, economic recovery on its way (hurray!) and yet,
clearly, standards of living still falling and food-banks multiplying.So leaving things too complicated for
me aside, let me reflect on my own past twelve months.

Early in the year, the two big
ecclesiastical appointments caused me to suspect that the Almighty hadn’t
nodded off.He’s the one to break
the mould – and in Justin Welby first and then in Jorge Mario Bergoglio the world was suddenly
faced with an Archbishop and a Pope of very different characters from any of their
predecessors right back to the first century.Justin Welby today concurred with Time magazine’s identification of Pope
Francis as Man of the Year.I must
say for me they are both outstanding examples of Christian leadership, men with the
moral mettle to practise what they preach. Francis “almost persuades me” to be a Catholic - good thing Justin's there too!

I’ve been kept quite busy talking about ending life well, a number of
times at St Mellitus’ College in West London and a couple of times on TV.The former I especially enjoyed.I suppose it was partly the erstwhile
teacher in me; and it was partly having a sympathetic audience prepared to take
the trouble to understand my gob-stoppered speech.It’s something, as you know, that I feel strongly about, and
which I think is under threat in the very country where the hospice movement
began.As Dame Cicely Saunders,
its pioneer, once said, “You matter because you are you. You matter
to the last moment of your life, and we will do all we can, not only to help
you die peacefully, but also to live until you die.”That should be the motto
of all geriatric and terminal care.

Well, certainly, helped by Jane and
family and friends, this year I have continued to live – and to live a
fulfilled life.I have had moments
of desperate frustration, part and parcel, as a friend of mine recently put it,
of“The joy and depths of this
terrible, painful and yet wonderful journey of loss, disability and dependence
- the gift
that has been given to us.”Yet I
have had times of great joy, such as the week’s holiday with all our family in
the middle of Devon in the sunniest August for years; getting down and into the
sea perched on a bulbous bouncing beach wheelchair; getting to know our
daughter’s rapidly growing special needs’ therapy puppy, and getting to know
new friends.

Two particularly special friends we made this year are Esther and her partner, Julie.It’s not
often that a chance encounter completely changes one - I'd call it a "God-moment".But hearing Esther explaining vividly the prolonged pain and exclusion she’d endured among Christians because of her sexual
orientation was the final confirmation for me that I and many like me had long been
responsible for a gross injustice in the very community which should be marked
by justice and love.Followers of
this blog will perhaps remember that I have long admired faithfulness in
same-sex friendships.However now
I believe something more, and that is that sexual orientation is not a
lifestyle choice, but an innate given, or gift.How can we withhold love and welcome from our sisters and brothers? I think we should bless them. It will for many seem an unremarkable
conclusion.Equally for many it
will seem heresy.There it is.It seems I keep on learning - slowly.

I’ve not been able adequately to express the power of
that meeting and my present conviction.The best I can do is recommend my book of the year, given me at
Christmas: Unconditional by Justin Lee (subtitled “Rescuing the Gospel from
the Gays-vs-Christians Debate” published this year by Hodder &
Stoughton, also published as Torn in the US).If you don’t
understand the hurt gays endure in the Church, this will give you some idea.

My DVD of the year has to be Les Misérables, that remarkable
achievement of performance, cinematography and, of course, of
story-telling.I forbad myself
seeing it in a cinema suspecting I would weep uncontrollably and loudly, and so
waited for the DVD to come out.I
didn’t weep uncontrollably, although I confess Anne Hathaway’s extraordinary "I dreamed a dream"
did reduce me to tears.However
it’s the film’s unbearably potent message of forgiveness and love that most
moved me and conjures the dream of how radically revolutionary a society based
on it would be.It would be the
Kingdom of heaven.

My woman of the year, apart from members of my family, is, I think, Jack
Monroe, a deservedly popular blogger, A girl called Jack looks back,
who in her own words “started this year living – existing – on a £10 a week
food budget topped up with five items of food from the Storehouse food bank
once a week. (And) ended it with a recipe book deal, baking biscuits on Woman’s
Hour, with a Guardian column, a debate in the House of Commons and regular
political and campaign pieces in the Daily Mirror.”She came across my radar when she was campaigning for the
poor and petitioning for a parliamentary debate about the rise in food banks.I just like her.

My man of the year, apart from members of my family again, is – sorry to
be predictable – Pope Francis.Here’s quite a good summary of why (not mine): Why Pope Francis is person of the year.I’m sure there are thousands of less
high-profile people who are equally acting out the good news of Jesus Christ,
but it is quite something to be in a position of such power and temptation and
to maintain one’s integrity and humility.No doubt he has made and will make mistakes.After all he is human.

Talking of the all too human, my sporting flop of the year has to be the England men's cricket tour of Australia
this winter. What a craven capitulation!The less said the better.And is the sporting triumph the second consecutive “British” win of the
Tour de France by Chris Froome, or the “British” Men’s Singles victory at
Wimbledon for Andy Murray? I guess I'd go for the Scotsman.

My outing of the year - well, I'll choose our two to Stratford on Avon, first to see As You Like It, with Pippa Nixon outstanding as Rosalind, to celebrate our wedding anniversary, and secondly to see Nancy Meckler's brilliant production of All's Well that Ends Well in company with our delightful out-laws.

So another year ends.And
I’m looking forward to my favourite morning.Tomorrow, I hope to wake up beside my lovely wife and realise
that I’ve been spared to enjoy yet another year of discovery, starting with the Vienna New Year's Day concert, coffee and croissants..., and then who knows what surprises and new or renewed friendships?Lord, bring
it on!

Monday, 23 December 2013

I'm a great admirer of Jack Monroe, the young mum who
a year ago was homeless, and this year led the campaign to have the steeply
rising number of food banks debated in the House of Commons, which took place
last week with the government, rather than listening, whipping its MPs to
prevent an enquiry about the reasons. Nevertheless it was an achievement that
food poverty in 21st-century Britain was given two hours of Parliamentary and
television time.

Jack writes a blog (and a Guardian column) which at the moment is about having a "cheaper little
Christmas" without compromising ideals such as using organic and
free-range products - full of useful tips. However, today's is different. She
quotes a Facebook status from one of her friends, which I think is so good, I'm
using it as my Christmas greeting to you.

Love at Christmas, by Sharon
Jaynes

A friend posted this on her Facebook page this
morning, andI thought I would share it with you. It comes from the book of 1 Corinthians, 13, verses 1 – 13.

"If I decorate my house perfectly with plaid
bows, strands of twinkling lights, and shiny glass balls but do not show love
to my family, I’m just another decorator.

"If I slave away in the kitchen, baking
dozens of Christmas cookies, preparing gourmet meals, and arranging a
beautifully adorned table at mealtime but do not show love to my family, I’m
just another cook.

"If I work at the soup kitchen, carol in the
nursing home, and give all that I have to charity but do not show love to my
family, it profits me nothing.

"If I trim the spruce with shimmering angels
and crocheted snowflakes, attend a myriad of holiday parties, and sing in the
choir’s cantata but do not focus on love, I have missed the point.

"Love stops the cooking to hug the child.
Love sets aside the decorating to kiss the husband. Love is kind, though
harried and tired.

"Love doesn’t envy another’s home that has
coordinated Christmas china and table linens. Love doesn’t yell at the kids to
get out of the way. Love doesn’t give only to those who are able to give in
return but rejoices in giving to those who can’t

"Love bears all things, believes all things,
hopes all things, endures all things. Love never fails.

"Video games will break, pearl necklaces
will be lost, golf clubs will rust. But giving the gift of love will endure.

X "

I'd just like to remind you that Love came down
at Christmas, and wish you much love in the next few days.

Monday, 16 December 2013

I really don't enjoy being in the public eye, but Jane and I were on Channel 5's evening news tonight: http://www.youtube.com/watch?v=227RAHqVDiA#t=12. We'd been interviewed about assisted suicide, which is in the UK news again because there's an appeal case before the Supreme Court basically seeking to legalise the practice for some. It's really a continuation of the Tony Nicklinson and Paul Lamb case, arguing for doctors killing an incapable terminally ill patient who wants to die because of "necessity".

The filming took about three hours - the clip they edited (well, I must say) played for less than two minutes. I hope it provided some evidence that not everyone with a "terminal condition" and very few disabled people want euthanasia legalised. I think Channel 5 got on to us because of an item we'd done for Yahoo News a couple of months ago which came on line last week. You can see Jane and me and the dogs here: Terminally ill man on why life is our greatest gift (Yahoo). (Jess has since been put down.)

There are many reasons why relaxing our laws to allow even a limited intentional taking of life is a bad idea. But they of course lack the emotional punch and sentimental appeal of horror stories. For myself I am always slightly suspicious of highly coloured accounts of personal suffering. They seem to me to be attempts to persuade by-passing the intellect. Of course the end of life is an emotional subject, and emotion should play its part, but if we abandon reasoned discussion we make ourselves prey to all kinds of prejudice and irrationality.

So what are my reasons for devoutly hoping that the nine Supreme Court judge reject this latest assault on the sanctity of life? Here are some notes.

Unintended
consequences

I
don't suppose the legislators who, acting from the best of motives, brought in
the Abortion Law foresaw that it would become a charter for disposing of many thousands of babies with Down's Syndrome or a cleft palate.

Hard
cases

Make
bad laws. Our system combines case law and legislation. The place for
considering ethical issues as hard and complex as this is Parliament, not the
law courts.

Compassion?

Yes,
I have compassion for people in pain and disabled and terminally ill. Tony
Nicklinson said to me the difference between himself and me was that I could
commit suicide if I wanted. It's not actually true. But compassion doesn't
really mean killing someone. It means sticking with them through pain. It means
relieving their symptoms and minimising their pain. It means good palliative
care.

Prof
Hawking's "pet" theory ("You would let your dog suffer") is one quarter right, three quarters wrong. We had Jess put down because her life was miserable, but also because she became doubly
incontinent, was likely to incur costly vet's bills, was no longer much fun to
have around. 3 of 4 reasons were to do with our discomfort, not hers.

Defence
of the vulnerable

I'm
not concerned for myself - although I don't look forward to the process of
dying - but I am concerned for the
vulnerable, the disabled who don't have a voice, the depressed, for the elderly who are at
risk through dementia or frailty - for those who are increasingly regarded as a
burden on their families, on society, on our
nation's resources. It's those people our laws should protect. The court case
seems to me to be about people who are far from vulnerable. They actually are
strong-willed, if desperate, and well supported.

Hippocratic
oath v necessity

As
I understand it, one request in this case is for health professionals (such as
doctors and carers) to be allowed to take someone's life or to assist in their
suicide: so for example allowing my doctor to administer a lethal injection at
my request. That opens the door to doctors ceasing to be healers and carers,
and becoming dealers in death. That is one of the most valuable safeguards in
the DPP's Guidelines on Prosecution in respect of Assisted Dying. I guess
that's why the BMA is against a change in the law.

As
events proved, there was no necessity for a doctor to end Tony Nicklinson's life. He could
refuse treatment and ask for only symptom control and pain relief.

Discriminatory

All
of us may refuse treatment: none of us may demand treatment. To allow one class
- ie. paralysed - to demand would discriminate against others and set a
precedent for any to demand "treatment" as we wished.

Justice
and mercy

The
present Suicide Act protects the absolute primacy of life - but allows room for
mercy with the discretion of prosecutor, judge and jury. It has worked, and it
isn't broken. Don't try and change it.

Fear

The
disabled fear a change in the law. We feel at risk. We don't want to be
endangered.

Many
ageing people fear it. The majority of elder abuse takes place in the home or
in care homes.

The
campaign for euthanasia encourages fear. It feeds on our natural fear of pain,
of dying and of the unknown. And it fuels that fear.

Fear
is toxic to a healthy society.

Rights

Rights
only come with responsibilities. My right to life, or to death, can't be
isolated. If my demanding the right to die endangers the lives of others, then
my responsibility to them trumps my choice.

'My
life'

Actually
life isn't our possession. We are part of life.

Religion

Everyone has a philosophy of life. Mine informs my view, just as anyone else's affects theirs. However, my objections
are pragmatic. I'm concerned about the consequences of eroding the law for our
society. I'm concerned about cheapening life - reducing it to a commodity. I'm
concerned about protecting the vulnerable. I don't want our country to go the
way of Belgium, where they're moving towards euthanising children, or of Holland
when we could face 13,000 assisted suicides a year. I'm concerned that we never
see euthanasia as an easy way to reduce our NHS and care costs.

Wednesday, 4 December 2013

'Tis not yet the season to be jolly, so I hope you will allow me some disillusioned observations before we're all ho-hoing down the supermarket aisles. They were sparked off when Jane read me an extract from the Humanitarian Aid and Relief Trust winter newsletter. In it Baroness Cox wrote this:"After one visit to Karabakh at the height of the war (between Armenia and Azerbaijan 2011), I brought back photographs of children shredded by cluster bombs. I asked the then Minister at the Foreign Office if the British Government would make representations to Azerbaijan, concerning the use of cluster bombs on civilians – a violation of international conventions. The Minster’s reply was brief and brusque:

'No country has an interest in other countries; only interests – and we have oil interests in Azerbaijan' – and I was shown out of the room."

I shared Caroline Cox's sense of shame at being British and disappointment in our political class. This augmented later by both our Deputy Prime Minister and our Prime Minister.

It was started by David Blunkett, Sheffield MP and former Home Secretary, speaking about the newly settled Slovakian Romas in his home city. He said: "We have to change the behaviour and the culture of the incoming Roma community because there's going to be an explosion otherwise. We all know that."

Mr Clegg, Sheffield MP too and Deputy PM, adding fuel to the fire, weighed in with: "There is a real dilemma when you get communities that behave in a way that people find sometimes intimidating, sometimes offensive. I think it is quite right that people should say so. We have every right to say if you are in Britain and you are coming to live in Britain and you are bringing up a family here, you have got to be sensitive to the way that life is lived in this country." As the Western Morning News sensibly commented: "This might all sound quite reasonable, were it not for the fact that the Slovak Roma in Sheffield have done little that could be described as either intimidating or offensive. But when it comes to gypsies, the age-old prejudices are trotted out with impunity; from the Brothers Grimm to Enid Blyton, they have been insulted and scapegoated."

The politicians should both have listened to Professor Yaron Matras, an expert on Roma culture from the University of Manchester, who accused both Nick Clegg and David Blunkett of "ethnic profiling" gypsies and claimed their use of "medieval stereotypes" was likely to increase rather than prevent the likelihood of attacks on Roma, who would inevitably then retaliate.

"People who meet Roma personally have a positive experience," said Professor Matras. "Those who get their information from indirect sources, such as parts of the media, have negative impressions – but there is nothing in Roma behaviour that is inherently more offensive or intimidating than for any other group."

One doesn't know what talks David Cameron has had in China about human rights on his current trade mission, but his press office has been keen to tell us what a success it's been, generating in a week, apparently £6 billion's worth of trade. It was sad therefore that the photo opp which appeared on the news I was watching was of him with a lady entrepeneur from the "gaming industry" who's going to invest in Britain - yippee! More of our countrymen getting into debt chasing an illusion!

And only last week, Tsar Boris, aka the Mayor of London, in the annual Margaret Thatcher lecture declared that inequality is essential to fostering "the spirit of envy" and hailed greed as a "valuable spur to economic activity". Envy and greed used to be two of the seven deadly sins. The ambitious Mr Johnson clearly thinks he knows better. I'm not sure he does, any more than he understands the mathematics of the IQ test. "Whatever you may think of the value of IQ tests it is surely relevant to a conversation about equality that as many as 16% of our species have an IQ below 85 while about 2% …" he said as he departed from the text of his speech to ask whether anyone in his City audience had a low IQ. To muted laughter he asked: "Over 16% anyone? Put up your hands. 16% have an IQ below 85 while 2% have an IQ above 130. And the harder you shake the pack the easier it will be for some corn flakes to get to the top." Well, they would do, old chap, as the IQ test is a bell-curve based round an average of 100. That's the normal distribution - get it?

It is truly depressing when a politician tipped by many as a future Prime Minister lauds envy and greed as economic and social virtues, and attributes wealth to intelligence and poverty to the lack of it. "You're poor, because you're stupid."

I also found it depressing to listen to another potential PM on Desert Island Discs. I'm not able to judge Ed Miliband's musical tastes, since I shared none of them, but was interested to hear what he had to say about his political assassination of his brother, David, in the Labour Party leadership election. You may remember that Ed declared he was running after David and narrowly won only with the support of the big union votes. As I heard it, his justification was that he wanted to put party before family. It was an extraordinary insult to his brother's abilities, and seemed to me a weasel way of saying, "I wanted to put self before family." I'm sorry, Ed Milicain, I can't vote for someone who lacks both selflessness and transparency.

Finally, as you'll detect, I'm quite even-handedly disillusioned with politicians of all three mainstream parties. One omission from my scatter-gun seems to be women. In fact two of the outstanding political breakthroughs have been achieved by women. The MP for Walthanstow, Stella Creasey's unremitting pressure has at last led to a U-turn by the Government on capping the interest rates of Pay-day lenders, and, on the international stage, it appears that the interim agreement between Iran and the big powers over its nuclear industry was largely engineered by Baroness Ashton, the EU's High Representative for Foreign Affairs. Women seem to be doing all right in politics.

So to redress the balance let me have a go at Cherie Blair, not exactly a politician but certainly a political figure. She was recently interviewed in The Independent. The headline was "Being a mother isn't a job. It's a relationship" It sounds exactly like a politician's sound bite. So I looked at the article and came across what she said about being a mother. In a way it sounds unexceptionable. “Don’t say being a mother is the most important job to do because being a mother isn’t a job. It’s a relationship. The quality of the relationship is what matters . The most important thing is the relationship we have with our children.” And yet it does sound like the words of someone who can afford a nanny, someone like a... millionaire barrister, or someone... married to a prime minister, or even... better, both. You might not like to describe motherhood as a job, but whatever you call it, there's nothing more important to do well than bringing up children. And whatever else it isn't, it certainly is hard work. I would reply, "Don't say being a mother is just a relationship. It's much more than that." I know politics is what politicians do. But it doesn't seem to me that ours are doing it very well.Now for the season of goodwill!

PS Here's hoping George Osborne doesn't come up with some madness tomorrow.

Friday, 29 November 2013

This week I've discovered the joys of long johns! It was a case of serendipity. I was looking for a fleece and came across some leggings, and then it occurred to me....

One of the snags of disability is you lack the normal means of exercise and therefore keeping up your circulation. And so your extremities get cold. Nowhere is this more true than going out in a wheelchair on cold days. I do have a sort of lower-body sleeping bag, cutely called a Cosy Toes. But that is not easy to get into and out of - and looks rather nursing-homey. I often go to bed with icy feet, which isn't kind for Jane - and sometimes wake me up.

Now I have a long prejudice against long johns. My lovely father used to wear old-fashioned thermal ones, you know the sort, cream-coloured, irritating to the skin and prone to going baggy at the knees. Sorry, I used to regard them as old men's underwear. Now, however, "layering" is all the trend in outdoor activities. I ordered the leggings. Very smart they were too - they just needed some surgery to make them suitable as male underpants. I tried them out one cold evening, and the result was a dream. Well, my legs weren't so cold.

So I explored further, and eureka!, discovered what I was really looking for. Really smart, full-length, denim blue, comfortable. I don't notice them when they're on, but as I sit and type my legs and feet are warm - and going outside to collect our new Motability car holds no fear. Hallelujah! I'm converted!

Friday, 8 November 2013

Yesterday Jane and I went to Woodley near Reading - No, let me start one or two steps back from there. I'm a great admirer of Dr Kate Granger. She is one brave person, though she wouldn't bless me for saying so! Here's what she wrote about herself:
"Iam a 31 year old Elderly Medicine Registrar working in Yorkshire in the UK. Nothing unusual about that really. But I am also a cancer patient, a terminally ill one with a very rare and aggressive form of sarcoma. On my blog I muse about current issues especially relating to end of life care, communication and patient centredness. I also write about my experiences as I approach the end of my life.

"I have written 2 books, The Other Side and The Bright Side. We sell these with all profits being donated to the Yorkshire Cancer Centre Appeal in Leeds. See my website for more details – http://www.theothersidestory.co.uk".

I challenge you to read her latest blog post without being moved and inspired (apologies again, Kate!): Dear Cancer Part 2. Anyway it was while researching some talks that I came across her comments about the Liverpool Care Pathway, which was rubbished inter al by the Daily Mail (no surprise there!). Her comments last November in contrast to the media hysteria were unsurprisingly extremely well informed and balanced. For example, "When my time comes I really hope my care will follow the standardised LCP approach. I fully believe it improves care at the very end of life and results in more ‘good deaths’ with comfortable patients not undergoing futile painful interventions and well informed, emotionally supported relatives, making the grieving process that little bit easier."

Sue Ryder House, Nettlebed

So that was step 1. Then Jane and I went to an MNDA tea put on by the local Sue Ryder Hospice at Nettlebed (once the home of none other than Ian Fleming) where our hostess, Lynn Brooks, mentioned a consultation afternoon being put for the Leadership Alliance for the Care of Dying People by Sue Ryder, in response to Lady Neuberger's More Care Less Pathway report which led in July to the Health Minister's scrapping the Liverpool Care Pathway and looking for an alternative approach. Was anyone interested? We were - and so we applied and got the last two places. Step 2.So, yesterday afternoon we drove across the Downs and along the motorway to Reading. Step 3. The Alliance was set up, I think, by a palliative care consultant in Oxford in order to produce a constructive way forward post-Neuberger, and it draws together parties from all over the health sector, from the Royal Colleges and NHS to those involved specifically in terminal care such as hospices. There were about 56 of us there on seven tables. Only a few of us were current "service users" and carers like Jane and me, though in the end all of us will be. It was an unusual experience being in a room where everyone was at ease talking about death and dying, but not a bad or morbid one - rather like the increasingly popular Death Cafés, I imagine. In fact one of the common themes that emerged from every table was the importance of communication, between the professionals and the patients (and if appropriate their families). I tend to agree with Kate Granger's ideal that a palliative care specialist should be present when someone is given a terminal diagnosis, or if not then at the next appointment. As a former teacher, I frankly think that the process of dying should find a place on the secondary curriculum. I'm not sure where it would fit in! Perhaps citizenship. Talking about what will happen to everyone seems a better use of time than debating the pros and cons of euthanasia, which only serves to increase fear of dying. Far better to break the taboo we nurture concerning death. Isn't time we were open about this great fact of life, rather than be scared stiff of it?I imagine almost everyone who receives a diagnosis of a terminal or potentially terminal condition experiences some moments of fear. I was no exception. I was diagnosed with Motor Neurone Disease in the same year that Diane Pretty had died in the publicity of her court cases. I was under no illusion as to what MND meant. I knew it was life-limiting and life-ending. In particular I had some fears about the manner of dying I could expect. These were fuelled by the campaign surrounding such people as Ms Pretty, which portrays those with similar conditions as 'sufferers' and 'victims' and drip-feeds horror stories to the media - with the effect of exacerbating public fear. Don't mistake me. MND, as a newly diagnosed friend recently observed to me, is a 'bugger', as are most neurological and terminal diseases. I suppose, for that matter, most dying is too - which of course none of us avoid. In Yann Martel's remarkable novel, The Life of Pi, which I'm reading at the moment, the turning point for the 16-year old Pi Patel, alone with the terrifying Bengal tiger named in error, Richard Parker, on a lifeboat in the Pacific Ocean comes with a discovery. 'I must say a word about fear. It is life's only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know. It has no decency, respects no law or convention, shows no mercy. It goes for your weakest spot, which it finds with unerring ease. It begins with your mind, always….'… Every part of you, in the manner most suited to it, falls apart. Only your eyes work well. They always pay proper attention to fear.'Quickly you make rash decisions. You dismiss your last allies: hope and trust. There, you've defeated yourself. Fear, which is but an impression, has triumphed over you' (chapter 56). It's as he accepts the tiger's presence, loses his fear and starts to face it up and almost to befriend it that he discovers his ultimately successful survival strategy. 'And so it came to be: Plan Number Seven: Keep Him Alive.'(My beef with the campaign for assisted dying/suicide is that it feeds on and fuels people's fear - our natural fear of pain, of dying, of the unknown. We're told stories to increase our fear of the big beast, death. And that is toxic to society. We lose our trust and our hope. We run scared of dying and lose our humanity.)The great joy for me yesterday was seeing in the flesh what the media seems to conceal rather than celebrate: the whole range of people from paramedics, nurses and doctors, to managers, befrienders and social carers whose ambition was to ensure that the journey towards death is neither solitary nor fearful. Talking can never remove the beast, but it can tame it. And that's why we should not be afraid to utter the very words, "death" and "dying". There's an excellent organisation called "Dying Matters" - no more concerned with the euthanasia debate than was yesterday's workshop, but working to break our society's unhealthy paralysing terror of death. It's neither sectarian nor political. It can be found at http://dyingmatters.org/. It seeks to promote discussion and public acceptance of dying.This is a time of year when euphemisms such as "passing" or "becoming another star in the sky" seem particularly inappropriate. We remember those who faced the raw reality of death in war. Death is no less real in peacetime. Let's face it, not run from it. Ultimately Pi Patel survives and Richard Parker disappears, never to be seen again.

As we drove home, the wispy clouds were starting to catch pink hues from the setting sun, and it was nearly dark as we arrived home.

Thursday, 31 October 2013

"'Child,' said Aslan, 'didn't I explain to you once before that no one is ever told what would have happened?'

"'Yes, Aslan, you did,' said Lucy. 'I'm sorry. But please - '" (CSLewis, The Voyage of the Dawn Treader, p 137). Sadly I don't recall the previous occasion that Aslan has a similar conversation with Lucy. (I have a feeling it's after the sacrifice of Aslan.) Answers below, please!

OK. I admit it. It doesn't take much to make me cry. But I've just been crying. I've watching this: http://www.youtube.com/watch?v=cWeKiZS-dxM. It's an extract from the last episode of Educating Yorkshire, the fly-on-the-wall documentary series which has just ended on Channel 4.

Jane and I made the mistake (possibly) of watching nearly the whole series yesterday. We'd watched the first episode when it was broadcast and decided to record the rest after that. So it was time to catch up. I have to say I loved it. It's all about Thornhill Community Academy in Dewsbury in West Yorkshire, but it could be in any normal school in the country. In post for two years the first-time head, Mr Mitchell, has a clear vision, a lot of energy and a great affection for his students. There's a real vibrancy about the socially and culturally mixed 11-16 school. The students are like any other cross-section of youngsters of their age - sociable, loud, fun and usually friendly. What it had in common with the last school at which I taught is that clearly for some children it was the place of greatest security in their troubled lives. Learning that some adults in life really do want the best for you and are prepared to believe in you in spite of everything was a transforming discovery for even the most "hopeless" cases. It was really impressive seeing a team of teachers and pastoral staff really united in creating a compassionate and hope-full environment for the children. It is no wonder that the production team chose to reserve the story of Musharaf's GCSE English oral ordeal to the last episode, since it was emblematic of the school's whole philosophy and practice.

It was by no means the only moving story of the series.

There was the posse of bolshy blond Year 11s who had "failed" their GCSE Maths on their first attempt, whom Mr Steer, the deputy, allergic to practically everything except teenagers, takes on determined to get them up to a grade C. There's a typically affectionate assessment of their teacher by "Shezza" (Sheridan) who reckons he's even cleverer than that Stephen Hawking guy! When their results come through in August, she's missed by 4%, but we're told they're having continuing tuition from their teacher, all determined to achieve that crucial qualification. Can I really have heard that Mr Gove is proposing denying such children the opportunity to resit exams?

Then there were the awkward lads like Tom and Jack who test the authorities to the limits of their patience and resources with their disturbed behaviour and bad language. There were teenage fallings out between best friends, Safiyyah and Hadiqa. I can imagine military men and leaders of industry "standing no nonsense" with such people, quickly throwing them out on their ear, letting someone else pick up the pieces. However these are young people, adolescents, and teachers are there to educate, to bring out the adult in them - and they will spare no effort and miss no trick to achieve the best for their charges. Not that they'd claim to get it right always, but they are honest hard-working professionals whose aim is transparently the children's best. (There's a local TV interview here with Mr Mitchell.) As Miss Uren, an English teacher, says, "When you go into the teaching profession, it's not just about teaching them English, or teaching them Maths. It's about teaching them how to become young adults, how to grow up, and we teach them just as many life lessons as they learn at home. That's part of our profession. That's what we do."

I sincerely hope that Channel 4 transmits a rerun of the series soon. When they do, I urge you to watch it. I trust too that the Secretary of State and his advisers examine it, and bite their tongues before indulging the all too easy and frequent pastime of politicians and lazy journalists of slagging off the teaching profession and comprehensive schools. (It's also on 4oD.)

An unexpected by-product of watching the programmes was that I realised what a buzz I used to get from my teaching especially in the later years. Maybe distance has lent enchantment, but I don't think I've experienced anything comparable in any other job. It made wonder what if....

The challenge of helping young people steer their way through the stormy formative teen years and the reward of witnessing them make a fair fist of the journey is unlike any other. People, among them some who should know better, like to smear the teaching profession as corrupters of the youth or as work-shy stick-in-the-muds do not know what they're talking about. They should take a leaf out of Mr Jon Mitchell's book - and instead write letters of appreciation to their children's teachers and to the staff of their local schools. I can assure you Thornhill Academy is not unusual among state schools. Its staff are like the vast majority of their colleagues.

Thursday, 24 October 2013

I'm listening to a fascinating conversation in our local coffee shop - I can't help it, I hasten to add, as it's being conducted in emphatic tones. The discussion concerns what's been dubbed "Plebgate".

What's interesting is that none of the participants is quite certain of the meaning of the word pleb. It is, I suspect, more familiar to those privileged enough to have received a public school and university education. Exactly what was said at those ugly gates blocking off Downing Street on Wednesday 19th September last year may never be known. One thing is clear and that is that the frustrated Andrew Mitchell did swear at the officers on duty (repeating the "f" word, so familiar from the lips of Malcolm Tucker in The Thick of It) for which he did subsequently apologise. Just as well in the light of the earlier comments of Boris, Tsar of London: "If people swear at the police, they must expect to bearrested. Not just because it's wrong to expect officers to endure profanities, but it's also because of the experience of the culprits. If people feel there are no comebacks, no boundaries and no retribution for the small stuff, then I'm afraid they will go on to commit worse crimes"!What is puzzling is where the offending word "pleb" popped up from. Is it in your ordinary copper's daily vocabulary, any more than it is around the table in this rather polite coffee shop? Last night on Radio 4, following the arraignment of the police federation representatives and the Midlands chief constables before the Commons' Home Affairs select committee, the very patrician Jacob Rees-Mogg MP declared that the police concerned ought to confess, "Mea culpa, mea culpa, mea maxima culpa" (sic - "Through my fault, my own fault, my own most grievous fault"). I'm not sure whether he expected the plebs to know what he was talking about, but he did at least reinforce the spin the opposition have been so keen to create, of a government of toffs out of touch with the majority of the population. At least Mr Mitchell avoided that and used gutter Anglo-Saxon instead. Personally I find it very sad when politicians undermine trust in the police, and/or vice versa. I know it's tempting to deflect blame on to others, but a cohesive society needs the mortar of trust.

Wednesday, 23 October 2013

I was struck by an interview this morning on Radio 5 Live with Romany journalist, Jake Bowers, about the potential demonisation of the Roma community following the Greek and Irish stories of authorities taking blond children away from their families. As you can see from his picture, he himself is fair-haired and so, he said, are his children.

Jake Bowers

He recalled the old nursery song, "My mother said I never shouldplay with the gypsies in the woodand if I did my mother said she'd send me out to beg my bread...", part of our historic anti-Roma culture. Certainly, traveller culture is different from the Anglo-Saxon way of life. He commented that he was one of an enormous family (17 children). Children are at the heart of gypsy families. "Why on earth would they want to abduct others?" However it is easy to assume the worst of others who are different - a trap we are prone to fall into, including me.So I was interested to read this article by Louise Doughty in the Guardian which I came across through Twitter.An 'angel' captured by gypsies?In it she writes about the negative assumptions that so many of us have made in the case of the four-year old "Maria" in Greece and the seven-year old in Dublin. My friend Laurie Webb who runs a B&B (www.casacristinaroandola.ro) in up-country Romania commented about it.

"Maria" and her adoptive parents

"A very good article. As I'm in everyday contact with Roma folk, I agree entirely with Louise Doughty. Yes, children in the village are often dirty but the living conditions are poor and soap is a luxury the families can't afford, but they are all loved by their families, and I rarely see a child who hasn't got a smile on their face. As for blond children, although there are none in my village, I know of two or three in nearby villages and they are the result of German genes in the Roma population from the Saxon Germans who occupied most of the villages in the area until the 1990's. The blond gene usually got into the Roma people through love affairs rather than marriage, but nevertheless it's there; so blond children do occur."Another possibility is that the blond children found with Roma families in Greece and Eire could have been unofficially adopted because they were the result of unwanted pregnancies in the extended family, or a close friend of the family, who had a liaison with a western European. Prostitution is all too common as a way of making money when jobs are hard to find or lowly paid if a girl/woman does find legitimate work. I've been approached three times while sitting alone in my car waiting for a friend by girls asking me if I want sex."Racist assumptions are prevalent even in the bastion of Liberté and Fraternité that is France, as well as in our own country among whose most prized possessions is tolerance. It seems they lie only just below the surface. I suspect that excising them requires more than legislation, rather a divine transformation. In the meantime we can at least police our public consciousness in the way that Ms Doughty has done in this case.

Friday, 27 September 2013

I was very glad to read in this article, Tanni Grey-Thompson and Stephen Hawking, that the professor's advocacy of assisted suicide has been intelligently challenged. Having ALS/MND like him, I'd been disappointed to hear he'd changed his mind about it, and had thought I should write some rebuttal. However I suspect her comment carries more weight and certainly will be more noticed.

One hears all too often the "I'd put my pet out of its misery" comparison propounded by the pro-euthanasia lobby, as an example of compassion. In fact, as Dame Tanni points out, it's all too likely to be the reverse, an example of objectification. Our dog, Jess, whom we like very much, is in her sixteenth year now. Reflecting on our decision to have her put down, whenever we'll choose to make it, I reckon it will based on factors such as her becoming incontinent and incurring increasing vets' bills and probably ceasing to give us pleasure. Those are all issues to do with us and our feelings and convenience and wallets. The dog has become an object - which, to be blunt, is the relation nearly every pet has towards its owner. Human beings are different.

Dame Tanni in her racing days

I suppose a physicist may be forgiven for regarding his body as no more than a sophisticated machine or computer, to switched off and scrapped when it goes wrong or no longer serves a useful purpose. But it appears that an athlete knows better.

Human beings are not merely animals or machines. They are subjects, not objects.

"So why not allow them to choose the time of their death?" I've been asked. "Why not let them say, 'I've had enough. I want to end it all'?" I hear that question, but the professor's comparison and the paralympian's answer provide part of the answer: it opens the way to the reduction of life to something we own rather than something of which we are a part. It pushes the door ajar for others putting pressure on us to euthanise ourselves, when we get messy to care for, expensive to treat, and not good company. When that becomes the way we think about ourselves then we have lost sight of the fact the life is our greatest gift, "from life's first cry to death's final breath".

(Do read Dame Tanni's article in which she also writes about Lord Falconer's approaching House of Lords' bill, his latest attempt to legalise assisted suicide, and if you have a tame peer you might write to her or him to say what you think of it.)